CEA spike

planner2
planner2 Member Posts: 12

Dear all. New to the forum here. My dad's CEA has been around 6 ng/ml since his colon resection in Jan '17. He refused Chemo after the surgery not only for quality of life reasons but also because it was "only Stage 2". His last CEA test earlier this week nearly doubled to 12 ng/ml from the only 6 months prior. The doctor ordered a PET/CT scan. The test was today. I am really worried.

What would be the next steps if the cancer has metastatized?  A biopsy to confirm the PET/CT scan results? How long does it take to recover from a biopsy? Is there risk of cancer growing really fast in the time from PET to biospy to treatment? Appreciate any response.

Comments

  • Twinzma
    Twinzma Member Posts: 236 Member
    edited July 2018 #2
    Easier said then done

    But you need to try not to worry. CEA is not a tell all. My husbands CEA had a rise recently (see I HATE NUMBERS)...Then it dropped to it's lowest level yet. There are so many things that can cause it to rise, and it's only our human nature to obsess upon that number and naturally think the worse. The truth will be told in the PET scan results and until they come back then you can't worry about the unknown. Eaiser said than done, it is a rollercoaster ride! You are in my thoughts and prayers! please come back to let us know how the results come back. 

     

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #3
    Twinzma said:

    Easier said then done

    But you need to try not to worry. CEA is not a tell all. My husbands CEA had a rise recently (see I HATE NUMBERS)...Then it dropped to it's lowest level yet. There are so many things that can cause it to rise, and it's only our human nature to obsess upon that number and naturally think the worse. The truth will be told in the PET scan results and until they come back then you can't worry about the unknown. Eaiser said than done, it is a rollercoaster ride! You are in my thoughts and prayers! please come back to let us know how the results come back. 

     

    Thank you for your wishes,

    Thank you for your wishes, Twinzma. Unfortunately, the PET/CT scan results are not good. :-(  The radiologist reports indicate small solitary metabolically active lesions in the liver and right lung. The SUV values were 6 and 6.2 for the lung and the liver. The one in the liver is in segment V of the liver close to the porta.   Waiting for an oncologist appointment to discuss options. I would appreciate if any of you can share your experience on treatment options. Specifically is it normal to consider lung and liver resections?  

     

    (I will start a new post so I can get answer to this question specifically).

  • Twinzma
    Twinzma Member Posts: 236 Member
    Oh, I am so sorry! It's so

    Oh, I am so sorry! It's so hard to hear, My husband had 30 liver mets, most of which are longer visable with chemo. He started on Folfox with Avastain, but has swithched to Folfri with Erbitux. I wish he would become resectable but so far is not. He handles the chemo well, is just really tired for a few days. He has managed to continue to work and still does most of the things he did before, just tires sooner. Keep in mind though that everyone reacts to chemo differently so I feel that he is VERY lucky. He does have a rash all over from the Erbitux but it is a good thing according to the oncologist it means it's working. 

    This is a tough journey and I am so sorry you are here. Know that the support you will recieve amongst the group is amazing so many inspirational stories that will give you hope. You are not alone in this you have so many here that will guide you through, pray and comfort you. 

     

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #5
    Twinzma said:

    Oh, I am so sorry! It's so

    Oh, I am so sorry! It's so hard to hear, My husband had 30 liver mets, most of which are longer visable with chemo. He started on Folfox with Avastain, but has swithched to Folfri with Erbitux. I wish he would become resectable but so far is not. He handles the chemo well, is just really tired for a few days. He has managed to continue to work and still does most of the things he did before, just tires sooner. Keep in mind though that everyone reacts to chemo differently so I feel that he is VERY lucky. He does have a rash all over from the Erbitux but it is a good thing according to the oncologist it means it's working. 

    This is a tough journey and I am so sorry you are here. Know that the support you will recieve amongst the group is amazing so many inspirational stories that will give you hope. You are not alone in this you have so many here that will guide you through, pray and comfort you. 

     

    Thank you

    thank you for the encouraging words, Twinza. Sincerely appreciate it. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Sorry

    Sorry the news is not good.  See with Stage 2 it is iffy whether "mop up" treatment should be used.  Most oncologists will recommend it to get stray cells from surgery leftovers or ones seeping into the wall of the colon.  At Stage 2 it is usually left up to the patient whether they want it or not.  It's a decision not easy to make so I'm sorry you and your dad are in this situation.  He will likely have chemo now.  I'm not sure where the original growth was but sometimes there is radiation involved too.  Wait until you talk to the doctor again and see what their plan is. Don't get too stressed out though.  CRC has come a long way and there are many treatments available that have been very successful in the last 15 years.  Wishing your dad the best.

    Kim

  • Mikenh
    Mikenh Member Posts: 777 Member
    I have seen people get to NED

    I have seen people get to NED from lung Mets and from Liver Mets. I can't recall someone with both though but that could just be my memory.There are various options to go after lung and liver mets. I have a friend on another board and her husband had CRC and liver mets last fall and he was NED as of late winter. He had two surgeries at the same time at MGH. I have a friend in Norway that recently had lung mets removed after going through the stuff for Stage 3 cancer that many of us went through and she's currently NED.

    My CEA has risen sharply from the last time so I know what the anxiety feels like. It was from 3.2 to 4.5 in a month (3.8 is normal). The absolute value is not that high but the trajectory had the oncologist concerned enough to order a CT scan.

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #8

    Sorry

    Sorry the news is not good.  See with Stage 2 it is iffy whether "mop up" treatment should be used.  Most oncologists will recommend it to get stray cells from surgery leftovers or ones seeping into the wall of the colon.  At Stage 2 it is usually left up to the patient whether they want it or not.  It's a decision not easy to make so I'm sorry you and your dad are in this situation.  He will likely have chemo now.  I'm not sure where the original growth was but sometimes there is radiation involved too.  Wait until you talk to the doctor again and see what their plan is. Don't get too stressed out though.  CRC has come a long way and there are many treatments available that have been very successful in the last 15 years.  Wishing your dad the best.

    Kim

    Dear Kim, thank you. My worry

    Dear Kim, thank you. My worry is that I  won't be able to convince my dad about chemo. He is really worried about side effects of chemo. From what I've been reading it looks like hotter than the hottest summer and colder than the coldest winter at the same time.

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #9
    Mikenh said:

    I have seen people get to NED

    I have seen people get to NED from lung Mets and from Liver Mets. I can't recall someone with both though but that could just be my memory.There are various options to go after lung and liver mets. I have a friend on another board and her husband had CRC and liver mets last fall and he was NED as of late winter. He had two surgeries at the same time at MGH. I have a friend in Norway that recently had lung mets removed after going through the stuff for Stage 3 cancer that many of us went through and she's currently NED.

    My CEA has risen sharply from the last time so I know what the anxiety feels like. It was from 3.2 to 4.5 in a month (3.8 is normal). The absolute value is not that high but the trajectory had the oncologist concerned enough to order a CT scan.

    Thank you Mikenh. I hope your

    Thank you Mikenh. I hope your CEA comes back to normal.

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Side Effects from Chemo Treatments

    You said that your dad is concerned about side effects and that is so understandable.  It is something that your dad needs to know that you are by his side.  The side effects can be tolerable.  There are so many medications that can help him get through the treatments.  Many people continue working through treatments so let your dad know that it is not a "bed ridden" absolute that he won't be able to handle it because most people get through it.  There can be some pitfalls, but the benefit vs. no treatment is what he has to look at.  What is the long term outcome that he wants?  Does he trust his doctor?  Will he listen to them?  Those are the questions that are important for him and he needs to make those decisions but then can't question why afterwards.  He needs to be comfortable with his own decision.  Wishing him well.

    Kim

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #11
    Thanks Kim

    ... had a consult today and the doctor bluntly said he has to have chemo if wants to see the next year... off we go to get another consultation.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    planner2 said:

    Thanks Kim

    ... had a consult today and the doctor bluntly said he has to have chemo if wants to see the next year... off we go to get another consultation.

    I survived and worked through

    I survived and worked through all 12 chemo[Folfox] rounds, with a port needle in my chest and chemo ball clipped to my belt, on many days. I was more fatigued and sensitive to warm days and cold water, among other annoyances, but I got through it. I was 49 at the time, I didn't read your dad's age anywhere, but it's amazing what you can get through when you have to. When the crc showed up in my liver, they needle-biopsied it a couple times, it's a hassle, but not a lingering thing. The Cea spike is similar to what I had with my two recurrances, I went from 6-44 by the first liver resection and 4-17 with the second, so no it doesn't necessarily indicate cancer spreading rapidly at all. Tell your pop he can get through this and hang out a lot longer, he just needs to set his mind on taking it day by day, and one thing, one appointment at a time. My best to both of you........................................Dave

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    planner2 said:

    Thanks Kim

    ... had a consult today and the doctor bluntly said he has to have chemo if wants to see the next year... off we go to get another consultation.

    A Second Opinion

    If he wants a second opinion - go for it.  My hospital brought my case before a panel of 12 and all of them didn't agree with my continued plan of more chemo, but a majority of them did if there was a future to my life and I'm glad.  I'm here 9 years later and able to help give some help on the boards.  It was a hard decision, but a wise decision.   But it's got to be a decision of your dad's and his alone and he has to be comfortable with it.  Glad he is getting a second opinion as I'm sure he will feel more comfortable if they concur.

    Kim

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #14
    Another opinion

    Got another opinion from a different oncologist today. This doctor's view was diametrically opposite to previous views. She said that the tumors on the PET/CT are small to get a high-confidence biospy, and that we should wait for another round of CEA (after a month) for the next action: if the CEA raises then prepare for surgery and/or chemo.

    Really worried at not doing anything for 4 more weeks. Meanwhile, scheduled  granddaugher-grandparent time for a week around the time of the CEA test. 

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #15

    I survived and worked through

    I survived and worked through all 12 chemo[Folfox] rounds, with a port needle in my chest and chemo ball clipped to my belt, on many days. I was more fatigued and sensitive to warm days and cold water, among other annoyances, but I got through it. I was 49 at the time, I didn't read your dad's age anywhere, but it's amazing what you can get through when you have to. When the crc showed up in my liver, they needle-biopsied it a couple times, it's a hassle, but not a lingering thing. The Cea spike is similar to what I had with my two recurrances, I went from 6-44 by the first liver resection and 4-17 with the second, so no it doesn't necessarily indicate cancer spreading rapidly at all. Tell your pop he can get through this and hang out a lot longer, he just needs to set his mind on taking it day by day, and one thing, one appointment at a time. My best to both of you........................................Dave

    Thanks

    Thanks, beaumontdave. My dad is 72.  We are in wait and watch mode for another month to repeat CEA. They said that the PET/CT hotspot is small to get a good read on the biospy.

  • Sammy2067
    Sammy2067 Member Posts: 5
    edited July 2018 #16
    Hi, Hope it goes well for

    Hi, Hope it goes well for your dad.  You stated he was stage 2 and didnt want to do chemo.  Could you answer a few question if you know!

    STage IIa, IIb, or IIc

    What was his Tumor description?  T1-2, T3a-b, T3(c), T3(d) or T4a orT4b

    On Pathology report:  Did it say he had Lymphovascular Invasion?, Perinerual Invasion, or Tumor budding?

    IF he was Stage IIa, with a T3a-b or less, and No Lymphvascular Invasion or Perinueral Invasion or Tumor budding, then no chemo woudve been a reaonsable call.  IF however, it was a T3c-d ot certainly a T4 tumor, making its IIB, or IIC, or with any "high risk factors for future Recurrence" like Lymphovascular Invasion, PNI, or tumor budding, then chemo was needed IMO.  At least oral pill form (Capacetibine/ Xeloda).  

     

    Either way, He will do fine with Chemo and can get through it.  If he has side effects they will reduce the dosage or change it up to what he can tolerate.  Even the oral pill form by itself at a minimum would be usefl. 

     

    Good luck and I am curious as the answers to the questions above if you know them

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #17
    Sammy2067 said:

    Hi, Hope it goes well for

    Hi, Hope it goes well for your dad.  You stated he was stage 2 and didnt want to do chemo.  Could you answer a few question if you know!

    STage IIa, IIb, or IIc

    What was his Tumor description?  T1-2, T3a-b, T3(c), T3(d) or T4a orT4b

    On Pathology report:  Did it say he had Lymphovascular Invasion?, Perinerual Invasion, or Tumor budding?

    IF he was Stage IIa, with a T3a-b or less, and No Lymphvascular Invasion or Perinueral Invasion or Tumor budding, then no chemo woudve been a reaonsable call.  IF however, it was a T3c-d ot certainly a T4 tumor, making its IIB, or IIC, or with any "high risk factors for future Recurrence" like Lymphovascular Invasion, PNI, or tumor budding, then chemo was needed IMO.  At least oral pill form (Capacetibine/ Xeloda).  

     

    Either way, He will do fine with Chemo and can get through it.  If he has side effects they will reduce the dosage or change it up to what he can tolerate.  Even the oral pill form by itself at a minimum would be usefl. 

     

    Good luck and I am curious as the answers to the questions above if you know them

    thanks Sammy

    It was T2N0M0 with good margins.

  • Sammy2067
    Sammy2067 Member Posts: 5
    edited July 2018 #18
    planner2 said:

    thanks Sammy

    It was T2N0M0 with good margins.

    T2N0Mo is Stage 1.  No one

    T2N0Mo is Stage 1.  No one really does chemo at that stage.  Would not have expected Mets to other organs with a T2N0MO.  The tumor was contained within the bowell wall.  Something else was going on at time of DX that was missed I bet.  Without your dads medical history, its hard to know.  

  • planner2
    planner2 Member Posts: 12
    edited July 2018 #19
    oops

     

    Stage IIA (pT3N0)